Discussions By Condition: I cannot get a diagnosis.

Constant weak Arms, and legs; Also constant fatigue.

My wife a 27 year old female, generaly healthy, used to work out everyday, but one day when we were on vacation in Brazil she started to feel weak on her legs, and something would shoot down her legs. We got back to the US. and I took her to the doctor, at first they thought it was a herniated disk which she does have but after a while she started to get weak all over her body; at that point they started to think it was something else because herniated disks do not cause weakness all over the body.

A couple of weeks passed by and they did not know what it was, and I took her to many different Docs. Finally she just would not hold her own weight so I called the Ambulance and they picked her up and took her to ER.

Initially she was treated for GBS (Guillian-Barre Syndrom) with Immune globulin Intraveneous. At first it appeared to work, but a week later after she started physical therapy, and right after her therapy she started to feel extremely tired, weak and also she would feel something running thru her body ( some type of tinggling sensation that would run back and forth thru her arms and legs, and also her head. She also, felt her head was extremely heavy.)

At this point she has been in the hospital for about a month and she goes from feeling much better(where she is able to hold her head, she can feed herself, sit up by herself and put herself on the wheelchair, to not been able to do all of the above plus feels tired when chewing her food she would chew two to three times and she needs to rest) and all this can happen in one day or even a couple hours. And lately she has been feeling burning feet, and legs, plus she has started to feel some pain of her legs.

Here are all the symptoms that she has been feeling for the past 3 weeks. Weak arms, and legs all the time, also, she feels fatigue all the time. She also gets more fatigue and weak if she walks a little bit, does not sleep, talk for a while, or does not eat for a long time. Also, when she is extremely fatigue, and weak she gets paralyze from all of her lymbs and face for about 30 minutes or sometimes it could last 4 to 5 hours.

At this point the Doctors have done so many test and they do not know what she has. If someone know anything or can think of anything we would greately appreciate any feedback. Thank very much in advance

16 Replies:

Has she had a tilt test, know somebody that went undiagnosed with weaking symtoms, drop attacks for 2 years or should i say falsely diagnosed as she was told she had parkinsons once and sent for psychiatrist another time until she had this test..now perfect.

Not sure what they have worked her up for already, or what her exam looks like, but some rarer things that may not have been considered may include hypokalemic periodic paralysis or Hashimoto's encephalopathy. Have they checked potassium during these attacks? How about thyroid ANTIBODIES (not hormones)?Sorry you are going through such a tough time.Anyone else have other thoughts?

One condition which can cause those symptoms including periods of paralysis is chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.). Unfortunately most doctors know very little about CFS and are not up to date with all the latest studies and info, so if she has got this.. doctors may not even consider it due to not even knowing just how severe it is for many of us. (The CFS people who enter the CFS studies, they are the weller ones, the more severe ones are home with carers and not partaking in the studies). At first it appeared to work, but a week later after she started physical therapy, and right after her therapy she started to feel extremely tired, weak and also she would feel something running thru her body ( some type of tinggling sensation that would run back and forth thru her arms and legs, and also her head. She also, felt her head was extremely heavy.) With CFS... physical therapy will end up making most of us worst.. it can actually be quite harmful for ones with severe CFS. Some it does permanent damage too!! (and has even been known to cause death for some with this condition severe). Im really concerned about your wife, if she has CFS and those doctors are unaware about all this.. they could really harm her.. the doctors if they treat her wrongly.. could end up permanently paralysing her or worst :( (this illness in rare cases can kill). I myself have found that when this condition has put me into hospital (ive been ambulanced there cause of this).. the lack of knowledge of the doctors on CFS, has been not at all to my benefit. When I was severe, I used to have to lean on something to hold my head up and chewing food can be a huge effort. (some with CFS have to be tube fed!! Eatting for some can have dire consequences due to the effort involved in chewing and trying to eat). It is said that CFS can vary hr by hr.. thou i myself find it can actually vary minute by minute. It's a very up and down, all over the place, unpredicatable illness. Please for your wifes sake.. find a CFS expert to contact to try to get to see her, before she is really harmed. With CFS, some abnormalities will be found if the "right tests" are done. That tilt table test is one test in which many with CFS have an abnormal result with. Romberg's test (a neuro test) is another one with could show up abnormality. (doctors who dont specialise in CFS have no idea what abnormalities to even try to look for). http://www.ahummingbirdsguide.com/themesymptomlist.htm is a site with a lot of info about severe CFS/ME (those wheelchair and bedbound). Your wife if it is CFS/ME needs to rest as much as possible! (as much as she needs) to avoid worsening of condition.

Some CFS statistics, (I put the most important part of this in stars) Survey of the experiences of housebound/bed-bound ME/CFS patientsMERGE,The Gateway, Perth; and the 25% Group for Severe ME/CFS Sufferers, Troon, Ayrshire Aims: We report the results of a UK survey conducted by the "25% Group", a patient-led group of which MERGE is the research arm, which has highlighted the seriousness of the condition of these particular patients and their needs. Methods and Results: In July 2000, a custom-designed questionnaire was sent to all 400 members of the "25% ME Group", a self-help organisation in the UK whose membership is restricted to housebound or bedridden patients. The questionnaire contained 18 questions about their current medical condition and their illness experience. Question responses were analysed descriptively. The Table below shows that 55% of respondents had been ill for more than 10 years, and 50% of them had taken more than 2 years to obtain a formal diagnosis of ME/CFS. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than 6 years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. ******* Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms ************ ; that 38% (81/212) described themselves as totally dependent on others; and that 48% (104/215) reported no regular assessment or management of their condition. Conclusions: This survey shows that human cost of ME/CFS can be substantial, a fact that is generally under-reported in the medical literature and ignored by systematic reviews of clinical trials. We suggest that the impact, prevalence and the pathways to chronicity of this disease need urgent investigation. ................................................................... The "25% group" is quite a well known group in the CFS circles. This group consists of the 25% of CFSers with severe (bedbound) CFS. Maybe you could contact that group for advice or contacts to help your wife find a CFS specialist to advise etc. There are also some world famous CFS experts in America, your wifes doctors maybe should consider getting in touch with one of them.

One thing that may really help no matter what else you do is to get an ELISA test (Enzyme-linked immunosorbent assay). It tests for delayed food sensitivities and has been a real help to my wife and others with unexplainable symptoms. These symptoms of food sensitivities are completely unlike your usual food allergies and they can mimic so many other problems.

i'm a 24 year old man and am feeling really weak and tired all the time. i'm on anti-depressants the now but am also an alcoholic and on antabuse at the moment to get me off it. however since i've stopped drinking all my self confidence has gone and i'm extremely anxioius out my house so never go out with friends anymore.i've been diagnosed with epilepsy and frontal lobe degeneration through alcohol and feel like this has ruined my life.i get so paranoid outside i feel like i've turned in to a freak and think people are laughing at all the time.also i feel that weak and that even the slightest confrontation would send meinto a panic attack.can anyone relate to me? please help !!!

Have you tried to see a "Chinese" acupuncturist (trained in China)? It happened to me about 20 years ago. I had a right lower back pain and the pain shot down to my right leg. Sometimes it was so painfull I couldn't walk for days. I went to see doctors from the Navy (I was in the Navy) then doctors from the Houston's medical center area then Chiropractic you named it. Then one day I went shopping at a local Chinese's shopping in Houston and met an old Chinese acupuncturist. I explained to him my problem and believed or not after 3 sessions of acupunctures (cost $45 each plus $45 examination fee) my pain COMPLETELY GONE FOR GOOD. The doctor told me my Qi was blocked behind my knee cap and he even knew it was happened long time ago. I am Vietnamese and was raised in US and after watching a lot of Chines kung-fu movie and Steven Seagal and still don't believe those needles but the pain was so great so I would try anything. Now I am a believer of this type of treatment. If the King used it then I guess it's good.

Not sure what they have worked her up for already, or what her exam looks like, but some rarer things that may not have been considered may include hypokalemic periodic paralysis or Hashimoto's encephalopathy. Have they checked potassium during these attacks? How about thyroid ANTIBODIES (not hormones)?Sorry you are going through such a tough time.Anyone else have other thoughts?I also have what appears to be flu like pains in my right arm and head, that never comes to head. paracetamol do not work. is suggestive of Graves Syndrome

As you can see from all the replies that were posted, it could be any number of things. Here is what you have to do when you or a loved on is thatsick and cannot find an answer. Go to a university hospital such as the Mayo Clinic in Rochester, MN or the Cleveland Clinic in Ohio or Rush university in Chicago. Bottom line is she is ill and if you want her to live you need to demand the attention of the top docs in the U.S. I have been sick as well for over a year. So sick that I cannot physically get myself to one of these places. And unlike your wife, I do not have family that are willing to go that far to save me. You may be the only difference between her living and dying. Good luck to you. God bless you and keep you and your wife.

Fatigue, weakness, tingling or "something running through her body" - Has your wife had a spine or brain MRI? Lumbar Puncture? From your description, it could be Multiple Sclerosis and the "running through her body" feeling could be the vibration that can go along with MS. I am an MS patient. Hope you have found your answers by now and wishing your wife and you health!

It sounded like my mother may have the same symtom as your wife. She just came back from Cambodia. Her fatique usually starts early in the morning and it would last til afternoon and she feels it runs up and down through her body. We took her to the doctor and they didnt seem to find anything wrong with her. Talked to several friends. We seem to think she may have caught a parasites. If you have found anything and if we find something. We will let you know.God bless,

It sounds like my mother is in the same condition as your wife. She must of caught it during her trip to south east asia. I really feel for you and alot for her. Have the doctor found a cure for her ? I'd love to know what it is. Thank you in advance,